Wednesday, 16 July 2014

A day in the life of our autism, summer edition

I wake up to my six year old son climbing into our bed at 4:30. He brings Big Teddy, Little Teddy, three pillows, a blanket and a handful of Angry Birds.

I hear my three year old up and moving, and find her splashing and stimming happily in the cats' water dish, the canisters I keep baking supplies in moved from the pantry to the middle of the kitchen floor, arranged in a descending spiral of sizes, each with a correspondingly sized Dora the Explorer or Abby Cadaby  doll perched on top. 

Good morning, autism.

She leaves off her redecorating efforts to look at me and make the sound that got her the nickname "Angry Kitten", and I offer her a cup of water, which she throws aside, yowling louder. I dig out her favorite breakfast biscuits and this is evidently what she wants, because she grins, snatches and runs with them. 

The Monkey is ready for his juice and his iPad, and very politely asks for them. When I don't simultaneously produce both instantly, he bursts into tears and asks, "are you very very angry with me?" over and over. I do my best to reassure him, while getting his juice and his iPad, as he declares he needs a hug and a kiss, and I try to do everything at once. Happily immersed in his Angry Birds or Plants vs. Zombies game, he settles on the couch and is calm again. 

Kitten has finished her breakfast and is digging in the cat food. I redirect her to the deck outside, where she runs back and forth, back and forth for almost an hour, while I make coffee and tidy the kitchen. 

Monkey approaches, naked from the waist down, declaring. "I peed in the toilet! I peed on the floor, too. I pooped in the toilet!" This is pretty obvious, since he hasn't mastered wiping or flushing yet. It is a good effort though, in spite of the pee on the floor, and he gets a quarter in his reward bank. I help him clean up and wash his hands, put on clean undies and shorts to replace the ones he left in the puddle on the floor. 

Kitten takes advantage of my distraction to go back to the cat food. She grabs double handfuls and lets the kibble fall through her fingers, delighted. She is angry when I interrupt her, but forgives when I turn on the water to wash her hands. She loves running water, whispering the rare words that she uses in context, "water water waterfall" on repeat. I again think that I need to get her a water fountain, one that she can't disassemble easily, so she can enjoy her waterfalls whenever she pleases without wasting water.

Daddy comes downstairs, goes to sit with Monkey and play his XBox. I ask him to change Kitten, and he does, while I get his coffee.

It is getting close to lunch time, so I assemble cheese and crackers. I add cucumbers to the Monkey's plate, and berries to Kitten's. They sit at the table, Monkey carefully assembling sandwiches out of the items on his plate, Kitten taking bites at random, mostly disassembling her food into tiny pieces and letting it fall to the floor. She jumps off her chair and runs to her toys, and I begin the sweep up. Monkey screams at me from his chair: somehow I have miscounted and he is one cracker short of completing his last "sandwich". He is beside himself and heading quickly into meltdown. I manage to forestall the worst of it with a quick addition of a cracker to his plate, and a head squeeze. He settles again, sobs decreasing, to finish his lunch by assembling, then abandoning the food, to go back to his iPad and his games.

Kitten is engrossed in her blocks, and I take the moment to go online, check my Facebook, my e-mail, Pinterest, my Etsy store. When she has been quiet for too long, I check on her, only to discover that she has knocked down the safety gate and got into my little workshop, and is dumping beads and buttons into a pile and doing her scoop and let fall again. I put the gate back up and reluctantly set up her rice table. I know that I will be sweeping rice out of everywhere, but so be it. 

Monkey's iPad is out of power, and he is ready to go outside, so I plug his machine in, and he plays on the deck, reenacting his video games with his figures and Lego. I try to get some work done on my jewelry, checking on the kids regularly.

Daddy does some yardwork and takes the Monkey with him. This leaves me some time to work until Kitten reminds me she is still there by grabbing whatever it is she can reach that I am working with and throwing it. As I gather up the debris, she leans in and bites my leg hard, not quite breaking the skin through my jeans, but leaving a painful welt that will swell and bruise painfully. This is not the first time, and will likely not be the last. I don't know how to address this behaviour, all suggestions and attempts so far have been unsuccessful. She giggles and runs away. I finish cleaning up. I put some ice on the spot, and wonder if I am screwing up by not punishing or ignoring or whatever else I should be doing to keep this from becoming a major problem. So far, she is just biting Mommy and Daddy, but she will be going to preschool this fall, and I wonder if she will try to bite the teachers, or worse, her classmates. 

Monkey is back in, looking for his iPad. It isn't charged yet, and he screams, "You hate me? You want me to die my iPad! You said you destroy my iPad!" Nothing will stop this one, he heads into full meltdown and I wrap him in a blanket and rock him as he wails. When it is over, he keeps saying, "sorry mumum, I not listen to you", and I try not to cry. 

Kitten is back in the kitchen and I finally let Monkey go and find her scattering rice and spinning, head thrown back and singing "Twinkle twinkle little star". No big deal, and she is happy. 

Daddy comes in, goes and takes a bath, then settles on the couch for more XBox with Monkey, and tells me to go take a shower while I can. While I do, Kitten poops in her diaper, and digs around in it with her hands. She isn't the smearer that Monkey was, but this is not too much better. I run a tub for her and get her cleaned up. 

 Monkey and Daddy are now watching TV, Monkey jumping on the couch then tearing across the house and back, hooting and flapping with excitement. I smile at his pure joy. He gets more exercise watching TV than most people do at the gym.

I make dinner, chicken and fries for Monkey, fries and cheese for Kitten, chicken, veggies and potatoes for Daddy and me. I put a bit of chicken and veggies on Kitten's plate, and some veggies on Monkey's plate, but I know they are unlikely to touch them. This is my good mommy habit. Sometimes they surprise me. 

The kids are in a mood to dance, so I dance with them to "Happy" and "Everything is Awesome", and then it is time for bed. Daddy takes the Monkey, I take the Kitten, and the next hour and a half, we read, sing, beg, scold, and finally, they sleep. I could sleep too, but I really need to finish the piece I was working on, and the floor needs its daily full sweep and mop, and the dishes need to be done, and the laundry should be moved over. We put on a movie and I get done what I can. I end up leaving the dishes for the morning. I know I will regret it, but it is almost 11, and I am exhausted and need to sleep. 

Reading this over, I think, what a dull person I have become. I used to read, to write, to craft more frequently, to keep up with a TV show or two, to leave the house now and then. With just Monkey, before the diagnosis, when there were just suspicions, I used to think that one day I would get back to being more like I was before kids. Then came the diagnosis, therapies, a second child, more suspicions, another diagnosis, more paperwork and appointments and constant vigilance. 

I love my kids, more than I can ever express. It drives me crazy, trying to deal with my own diagnoses, theirs, and still find some time for fun and family stuff. This fall, when Kitten is in preschool for half days, and Monkey is in grade 1 (!), I will perhaps be able to find a little time for myself. But I can't fish too far in the future for happiness. Autism and ocd and anxiety and depression, they just ARE. I can't make them go away, like it or not. There are moments of joy, though, and we get through it with laughter, and tears, and a lot of stimming. 
I have to find that joy, where we are now, day by day, not in some imaginary future when things are more settled or the kids are older, or I figure things out better. Day by day. This is our autism.





What does your autism look like? Link up a new or old post with myself or Jessica of Don’t Mind the Mess or let me know in the comments.